Written from the heart, this is the unadulterated truth of life with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

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The missing link

Would you believe that I still can’t make up my mind about my meds? I didn’t call the Doctor, I decided that I had to be a grownup and make a decision for myself. So here we go, this is my decision-making process, a peek inside what’s going on in my head, I just hope we find something. The starting point has to be to lay down the reasons and options. This whole thing is about getting my pain levels back under control. Over the last few months, they have been rising along with the increase of all the sensations that my body creates. They are inclined to trigger each other and I land up in these maddening spirals, which escaping take a rather large mallet, it’s just finding the right one. I have talked about extensively in the last month or so, about how I am being driven to the edges of distraction by a body that is out of control. If you don’t know the details, well it’s all written here, you just need to go back a couple of weeks to get right up to date.

It doesn’t take a genius to work out that living in constant pain, above the level where you are comfortable, isn’t nice. There are no painkillers that totally remove the pain, but to date, a combination of Morphine, Gabapentin and Amitriptyline have done the job not too badly. Both the Gabapentin and Amitriptyline are at their peaks, there isn’t even any wiggle room left there. Which leaves the Morphine, technically, that can climb and climb, up to unbelievably high levels and my Doctor is more than willing to raise it. It’s me who has the problem, with that.

I have this inbuilt fear of raising it any quicker than is absolutely and I do mean absolutely necessary. It’s a fear I have had from the very first time they mentioned the word. To me, Morphine is the drug of last resort, it is only used when everything else, has failed, and there is no hope left. After all, they don’t hand out Morphine for a sprained ankle, it is a drug that has a finality about it, if you like, it is the drug of the dying. I have been on it now for about 8 years, possibly 9, I’m not sure. What I do know, is that it scared the hell out of me, I took that first tablet expecting to feel drugged and out of control. What actually happened, was my pain almost vanished, other than that, nothing. I wasn’t having hallucinations or any, of the other things that for some reason I expected to. I was pleasantly surprised, but still hesitant about that name and the pictures it conjured up. MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are controllable. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years

MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are in my control. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years is too far off to be able to get any real answers. Morphine scares me because, it has and always will spell out the end of life, the end of my life.

The Duloxetine was prescribed to replace the Amitriptyline in the hope that it would offer a higher pain relief. I would have to take it for about three weeks to see if it does or it doesn’t, but it’s doing to me all the things that I fear about Morphine, which is beyond ironic. I have now taken four 30mg tablets, over four days, the first was the worse and each one since, has been slightly less reactive to the previous. I am still feeling disconnected, sensations are still heightened and I don’t feel right, which I really don’t like. On Thursday, I am supposed to double that to 60mg, right now, that terrifies me, as it also means the end of the Amitriptyline. I won’t miss the dry mouth, but when it is gone, will this new drug then turn out to be useless, will I be spaced out, terrified and in more pain? The only way to find out, is to do it, but is it worth it? I could just quite simply take the uplift in the Morphine and tell myself to stop being stupid.

This is the problem of owning a brain, if we didn’t have one, life would be simple, well maybe not, but you get my point. My problem isn’t physical, it is literally all in my head. I might know exactly where I am, I might have accepted exactly what that means, but it appears, that somewhere in this stupid head, I’m just not ready to act on it. Yes, I can throw the drugs down my throat, I can sit here day after day content in my day and my life, but I’ve been avoiding those bits I just don’t like the sound of. I’ve been giving them a rather large body swerve. The odd thing is, our care actually allows us to do just that. Look it up, “symptomatic treatment” and “palliative care” are exactly the same thing. No one ever said that all they could offer me was “palliative care” because, they know the mental connections that phrase would light up. No they said, there was nothing else they could offer, other than “symptomatic treatment”. Call it what they want, I don’t think that I really have a choice here, I want the pain back under control and I don’t want to feel like I do. The truth is, that either way, Duloxetine or Morphine, the treatment is called the same. My body has made the decision, I don’t think it could have made its opinion of Duloxetine any clearer, it not for me. Tomorrow, I will call the doctor with my decision and go with the increased Morphine, at least, I know where I am with that drug, unlike now, where I’m fighting to just know who I am.

6 thoughts on “The missing link”

While I don’t have all the pieces to my puzzle (yet? I may never have them…), I blogged the other day that at times I feel as though I’m on the installment-plan version of hospice care. It’s a difficult way to live, and I resisted upping my pain meds for years for similar reasons you’ve described. Morphine is next for me. I don’t know when I’ll be willing to take that step, but I do know I probably won’t take it until long after it’s necessary.

I for one am glad you made the decision you did Ive been on 80mg of sustained released morphine for a long time and I take Norco(hydrocodone) for breakthrough pain Duloxetine is a drug that can interfere with serotonin prod when taken with other serotonin producing drugs like gabapentin and amitriptyline You can develop something called serotonin syndrome like I did I almost died drugs were not metabolizing properly through my liver they were blocked……serotonin synd. this happened in the 90s A smart chinese gastroenterologist in Lincoln NE figured out what was wrong with me Now I am extremely cautious about combo of drugs I take NOT a single dr knew about this except for the Chinese Dr It is known now but not common you should be able to research. Luck to you my Irish M.S. buddy My other Prms friend is in hospital going to visit her today☺

It’s sounds as though I have had the luck of the Irish, but please don’t take offence, but I’m Scottish. LOL I hope your friend is doing well, and will be out soon, at least you’ve located another of us, there are very few 🙂

Hi can u tel me pls what symptoms of serotonin syndrom are? I take a lot of different prescription meds and v often get a strange feeling on left side of heah and forehead. Cant really exlain it. Like a contracting sensation but painless. Mayb kinda creepy and sometimes imaginary cold sensation.Dr doesnt take me up on it when i mention it.What r ur illnesses and symptoms?i have arthritis. Fibromyalgia. Osteoporosis thickning at top of lungs. Anxiety and depression and recurring chest infections.so its hard to know what causes what😆

There are no symptoms I was found unresponsive low respiratios by my now exhusbans rushed to hospital A smart Chinese Doctor ran a bunch of tests mostly blood values said liver not metabolizing drugs properly and he didnt say opioids He said serotonin prod drugs like SSRIs anti depressants You can. Look up on internet what drugs are serotonin producing and make sure you dont take more than two of them or you can die that plain and simple